Doctors say easy-to-follow instructions are needed for follow-up care

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WASHINGTON — You've finished the surgery, the radiation, the chemotherapy. You're a winner, a cancer survivor. Now what? A new push is on to provide patients with "survivor plans," long-awaited blueprints for the customized follow-up care they'll require for years.

Rates of women who are opting for preventive mastectomies, such as Angeline Jolie, have increased by an estimated 50 percent in recent years, experts say. But many doctors are puzzled because the operation doesn't carry a 100 percent guarantee, it's major surgery -- and women have other options, from a once-a-day pill to careful monitoring.

Few today get that careful send-off as they leave cancer specialists and head back to their regular doctors, even though the Institute of Medicine alerted the nation two years ago that these survivors' special needs weren't being met.

Now a major doctors' group is creating easy-to-fill-out checklists that survivors can hand to future physicians — what checkups to get and when, what late side effects their treatment may trigger, what new symptoms to watch for.

The American Society for Clinical Oncology recently posted the first such documents — for colorectal and breast cancer — on its Web site, free to copy and customize. ASCO is developing guides for other leading malignancies — lung cancer is next — and a more general plan for less common cancers.

"We're at the cusp of a very dramatic change in the way we're going to be delivering coordinated care for cancer survivors," predicts Dr. Patricia Ganz of the University of California, Los Angeles, a cancer survivorship specialist who spearheaded the ASCO guides.

Today, "the patient feels lost," she explains. "If everybody has the same marching orders, it will be a lot easier."

There are roughly 10 million cancer survivors, a population rapidly growing thanks to advances in early detection and treatment.

Responsibility for aftercare
When active treatment ends, those people too often don't realize their simmering health risks. It's not just the possibility of the initial cancer returning or a new one forming. Treatment may have left infertility, memory or mobility damage, impaired organ function. Some side effects may not appear for years. Then there are psychosocial consequences, from depression to problems keeping health insurance.

Consider the contrasts: Have a baby and you're sent home with care instructions, including when mom and child are to check in with their respective doctors. Have heart surgery, and likewise you receive nutrition and exercise rules, a list of worrisome symptoms and a checkup date.

Cancer treatment typically is far lengthier and complicated. Yet oncologists until now have had no standard way to offer a similar guide. Doctors like Ganz have pioneered survivor plans at specially designated cancer centers, but few people are treated at such hospitals.

"A lot of patients get dropped," says Dr. Aziza Shad, who directs Georgetown University Hospital's cancer survivorship program and writes survivor plans for her own patients.

"I personally think it's the responsibility of every treating oncologist to have this information available," Shad adds. "You did the treatment. ... Your responsibility is also the aftercare."

Shift in doctor thinking
The new guides come in two parts. First is a detailed treatment summary: The cancer's type and stage; tests of lymph nodes, genes and other indicators of prognosis; how much chemotherapy patients actually received, as side effects often mean skipped or lowered doses.

The second part is a consumer-friendly list of future exams and what symptoms to watch for.

A written document is crucial because even when doctors patiently explain cancer treatment, "patients are notoriously overwhelmed and not hearing half of what was said," says Ellen Stovall of the National Coalition for Cancer Survivorship, herself a repeat survivor.

How can it make a difference?

Say a woman suffers some shortness of breath. Does her family doctor assume it's the 20 pounds she just gained — or do a more sophisticated heart exam because she's a breast cancer survivor? Certain chemotherapy can cause serious heart damage.

Say a breast cancer survivor later gets lymphoma. Her new oncologist would need to know exactly how much of the powerful chemo adriamycin she received before to know if it was safe to try again.

Ganz saw a patient last week who had beaten lymphoma at age 29 with chest radiation, but now has breast cancer in her 50s. She wanted just the tumor removed, but that requires radiation therapy and it's often impossible to radiate the same spot again. Amazingly, the hospital found her old radiation records — and doctors could tell the new rays wouldn't overlap the old, letting her keep her breast.

And Georgetown's Shad recounts a child who disappeared from her clinic's follow-up care for five years — only to reappear with a drastically lopsided face. Radiation had stopped short the bone growth on one side of his body, something his new doctors hadn't anticipated in time to treat.

"Thank god we have plastic surgery," she says with a sigh.

The concern is whether busy oncologists will embrace the guides; they do create more work. Legislation is pending in Congress that would require Medicare to pay for cancer-survivor plans.

"It's going to require a real shift in doctors thinking about how they spend their time with their patients and what they need to know," says Stovall — who urges patients to ask for the guides.

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